Motherhood & Parenting

Surrendering to God’s Will

We are home from Paul’s latest surgery–his fifteenth, I believe, in less than two years.

Waking up in post-op. Still groggy.

Lately Paul’s doctor has been attempting to find just the right valve for his spinal shunt to allow for a maximum flow of fluid to release from his brain without causing other problems elsewhere. It’s a tricky thing. You’ll remember that Paul’s initial problem is an arachnoid cyst that sits on top of his brain, under his skull. He has a second shunt embedded there that is no longer functioning and which they cannot remove without damaging his brain. This surgery, however, was for the spinal shunt. In particular, it was to replace the valve located in his side.

Oh, it’s complicated. So complicated in fact that Paul’s doctor knows of no other case anywhere that even comes close to Paul’s. And as it is, this is the last known valve to exist that we can try. In other words, we are desperately hoping that this will work. There’s nothing left.

We know of course that we’re in God’s hands, though. He has willed all of this suffering, and so we rest in His care. Now this is an easy thing to know, but less easy to feel, especially when Paul is suffering. Instead of crying about it–of which I’ve done plenty–there’s only one thing to do, however, and that’s to live! We trust in Jesus, no matter what happens.

Right now Paul is doing and feeling well, in spite of the dreaded swelling in his spine, but pray for us, dear Readers. Pray for Paul; pray for a miracle.

Swelling in his spine that doesn’t want to go away. It’s this swelling that causes the spinal catheter to slip out, resulting in ceaseless vomiting and/or worse.

Paul, showing the site of his recent surgery wherein his doctor is experimenting with the last known valve, which connects to the spinal catheter.

Happy to receive candy bouquets! Thank you grandma and grandpa!

Motherhood & Parenting

Update on My Son, Paul

Dear Readers,

I write this morning asking for prayers.  Our son, Paul, is currently in Rochester, MN, being monitored at the hospital in the ICU.

My husband and father-in-law drove down a few days ago for an Intracranial Pressure Monitor to be placed under his skull.  This device monitors the pressure in his brain to determine if there’s too much.  For example, the doctor explained, when you have a bowel movement, the pressure levels in your brain reach 30, but only briefly.  Normally the levels of pressure in your brain do not exceed 20 mmHg.

One cannot sustain high levels of pressure for extended periods of time without eventually doing great damage to the brain.  In fact, one of the first things to go are the eyes.  Blindness will result from high, extended levels of pressure.

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Paul, after surgery yesterday with the Intracranial Pressure Monitor

In any case, Paul’s doctors are concerned that his existing shunt, which was placed in 2012 to drain an arachnoid cyst, might be causing problems.  The only way to determine if this is the case, is to monitor it.

Immediately upon placing the monitor on his brain, the doctors noticed elevated levels of pressure of around 40.  Obviously, this is not good.  After a few hours, however, it did go down, when Paul’s migraine went away.

Last night, though, was a rough night.  Paul had another migraine and spend the night intermittently vomiting.  The pressure levels in his brain reached into the 50s and did not return to normal until around 6am.

Later today, we should know more information, as to what the doctor wants to do.  He’s only seen a handful of these cases – children with existing shunts experiencing dreadful migraines.  We are praying that the angels will guide the doctors into making the right decisions.

Please, remember Paul and his doctors in your prayers today.

Call Me Catholic

Happy Easter!

Dear Readers,

Happy Easter!  He is risen, Alleluia!

Here’s a snapshot of us all yesterday, celebrating at my inlaws’.  As we didn’t want to leave anyone out of the photo, we had to get creative.

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My husband is on the left, with our children behind him.  His parents are in the back row, left, and his grandparents the back row, right.

It’s been a whirlwind of a week, as the baby has been very sick.  A few weeks ago she had an ear infection, but never recovered.  She only got worse – vomiting and diarrhea.  This went on for four weeks, during which she all but quit eating and began losing a dangerous amount of weight.  It was very stressful, to say the least.  At her lowest, she weighted 15 pounds, 4 ounces.  Keep in mind that she’s 14 months old.  (I ran into a friend the other day with her 3-month-old baby, who weighs 18 pounds.  That should give you some context.)

Needless to say, Holy Week was very dark for us.  However, she has snapped out of it and has begun to eat again.  Alleluia, alleluia.

And another update…

We will be traveling to Mayo Hospital in Rochester, MN, to have my son with the migraines thoroughly examined.  These appointments begin on Wednesday with an EEG and continue throughout this week and next week.

We’re hoping to find some answers, as his migraines seem to be getting worse with lots of vomiting and now his body locks up during the intense ones, and he’s not able to move.  He’s also blacked out a few times.

His case is a little complicated too, due to his having an arachnoid cyst on his brain, with a shunt draining into his stomach cavity.  Doctors also recently discovered a minor Chiari I malformation, but it isn’t certain that any of these things are causing the pain.  He could just be an extreme case of childhood migraines.  We’ll see.

As many of you are concerned, I will try to offer updates as we go along.

In any case, remember us in your prayers!

Motherhood & Parenting

More Migraines

Dear Readers,

Today I ask for prayers.

My son’s migraines have been increasing in frequency lately.  Instead of suffering a major episode once every 3-4 weeks, he’s now experiencing them every 5-10 days.  In case you’re new here, his migraines begin with a headache, but quickly advance to an all-out debilitating migraine.  He quits moving; he quits eating.  He curls up in a ball on the couch or his bed and trembles in pain.  His eyes glass over, and he moans.  Hours later, he vomits and vomits.  It takes anywhere from 24-48 hours to come out of it.

After visiting with three of his doctors yesterday, we have yet another CT scan scheduled for tomorrow to check his shunt.  (When he was 3 years old, we discovered an arachnoid cyst that covered 1/3 of his brain.  This shunt continually drains this fluid into his stomach cavity.)  I am not very hopeful, however, that anything will be discovered because he just had an MRI this last fall with everything checking out just fine.

In any case, if you have a minute, stop what you’re doing right now and offer a small prayer for him.  His patron saint is St. Paul, who was no stranger to suffering himself.